Stay #2

On Friday, the day after my release date from stay #1, I had a few tests to have done. While I was waiting for test #1 I ran into my reg pulmologist Dr. Blue Eyes. He was sad to hear I felt like crap. He could also visiably see my whole body shaking and guessed my Prograf was too high, would look into my numbers, would order something other than glorified Tylenol for my pain, and told me I was doing SO SO SO good for being less than a month out! Chin up, it would get better.

Test #1 was a nice simple "spyro" which just measures my current lung capacity. While I didn't feel like I was moving more air, it turns out these lungs are working at least 4 times better than the old ones. It was good to see that, because really, I couldn't feel it in here.

Test #2 was a high resolution CT scan of my lungs. Ct lady said my right lung had fluid around it. No one called me all weekend, Bill was here to visit, and on sunday I called the home health nurse to come and see if she could pack the old drain tube hole that won't seem to stop draining.

Monday morning was a morning of tests again. Starting the morning off with a 7am bronchoscopy with biopsy. That's pretty much where it all went down hill from. They got in for the bronchoscopy and found my lungs look GREAT, but the right one was smooshed. They called in radiology to do an ultrasound to look for pockets of fluid. They found a "medium" sized one that they decided to put a chest drain in for, though the radiologist thought he'd gotten it all with the 500cc of fluid he pulled out at placement. Dr Golden (fabulous pulmonologist) said they would be doing NOTHING else to me while I was there, I'd stay over night but as soon as it quit draining I could go home. This was one of those little drains, about the size of a straw, but they placed it in my back. You can't lay on it. Mine you couldn't even TOUCH without me going through the roof it hurt so badly. Once they finally found me a bed, 12 hours in the radiology dept on a gurney, the nurse I had was instrumental in getting me some pain meds. The doctors couldn't agree and in the mean time where just letting me lie there in agony. She was one of my nurses during stay #1 so she knew what I HAD been on and what HAD been working so she just kept on them all night until she finally got me something. She also had to track down my medications since there were no orders for those either. She must have came into my room hourly with another something for me to take as the orders trickled in. While she was there she would help me shift my weight around and make it so I could lay as close to on my back as possible. This let my mom rest as she was up with me all the rest of the time.

I drained jut shy of 1000cc that night alone. We had thought that I would be home from there yesterday afternoon because at 1:30 it seemed things had slowed way down. However as the afternoon rolled into night I drained another 250cc. One more night and today they let me go, again. All in all, with the initial drainage at placement, this "medium" fluid buildup drained close to 1800cc. My heart rate has dropped considerably, which we really expected with the new lung placement but was hard to call with the pain I was in. When the poor girl came into remove the drain today I warned her it hurt like heck. She said #1, this is in a horrible place. And #2, it's laying against your diaphragm. Every wiggle, sneeze, burp, bump, cough moved it either into my ribs (where they push the tube through for placement) or into my diaphragm. When she pulled it, it was pure fire from my shoulder to my belly button. Then my right leg went all pins and needles. Once the burning stopped, about 3 min after she was done, it really did feel better.

Mostly I can notice the reduction in fluid only in that it is slightly easier to draw a breath. You'd think it would be a HUGE change. I'm sure it is! Only my chest is still on and off numb. This could take months to go away. When I get jiggled or bumped around, say in a car, my chest goes numb, and while I know I am breathing, and can sort of feel that, it feels mostly like a great weight is on my chest.

I have a free pass tomorrow and am hoping to get back to my walking, which has been far less than I was hoping to achieve. My babies will get here tomorrow, and while I'm not sure I'm having Bill leave them altogether, I am looking forward to a visit.

I'm getting rather shaky now, so I'll go for now. I hope you all have a Happy Thanksgiving. Thank you all for your thoughts and prayer. As always, one step at a time. At least now there is a light at the end of the tunnel and it isn't just a freight train headed my way.